Parents of disabled children giving up on Illinois

Families move to other states as Illinois' social service funding shrinks

Chrisa Hickey, a northwest suburban mom whose 16-year-old son hears voices, has bought property in Wisconsin with an eye to the future.

She wouldn't leave Barrington for career, retirement or the more languid pace of small-town living. Her relocation plans are strictly a way to keep Tim in his $85,000-a-year residential treatment center, currently funded by the state of Illinois.

"People ask, 'Why spend that kind of money on one kid?' And I tell them that he's 6-foot-2, 200 pounds and could pick up a desk when he was 4. If he gets angry in class, do you want him sitting next to your kid?"

Although no one tracks why people leave one state for another, anecdotal evidence suggests Hickey is one of several who are planning to leave Illinois — or has already left — because of diminishing human services here.

Jennifer Humbert of Crete is exploring job prospects in a handful of states, including Minnesota, to secure more help for her 8-year-old daughter with bipolar disorder. Vicky Rowe has already uprooted her family, moving from Broadview to Niles, Mich., last year to boost treatment for her 9-year-old with cerebral palsy. And one week after Patrice Evans' preschooler was diagnosed with autism, her Grayslake home was on the market and she was headed to Kenosha for Wisconsin's generous funding of intensive therapy.

As Illinois lawmakers go into their final hours before their scheduled Tuesday adjournment, and with the House and Senate offering competing budget proposals, there's a fight to determine how deep officials will cut — or eliminate — programs that aid the state's most vulnerable residents.

Legislators say it will take all this and more to shrink the state's multibillion-dollar deficit.

"If we don't significantly get spending under control, we're going to have a jobs climate that makes it hard for a whole lot of people in this state to succeed," said Republican budget guru Sen. Matt Murphy of Palatine. "It's not easy. You've got to say no to some people. You've got to prioritize."

Even though similar sentiments can be heard in statehouses nationwide, Illinois fares particularly poorly caring for its residents with disabilities, advocacy groups say.

In its 2011 state analysis, United Cerebral Palsy ranked Illinois 48th for providing services. By comparison, Michigan is third, Minnesota 14th and Wisconsin 20th. The University of Colorado's Coleman Institute of Cognitive Disorders also puts Illinois near the bottom for funding autism spectrum disorders, while the National Alliance on Mental Illness gives Illinois a D.

"I have absolutely no confidence in Illinois," said Humbert, whose daughter's transportation to therapy was eliminated last year.

Parents are propelled by a sense of urgency. Regardless of the disability, the earlier kids get help, the better the outcome, so families are rallying in Springfield, badgering officials and launching online petitions.

Or, like Chrisa Hickey, they have purchased a "shack" in Door County, Wis., in case her son's Illinois funding, known as an Individual Care Grant, is trimmed. Tim struggles with schizoaffective, bipolar and cognitive disorders, requiring 300 days of hospitalization between 2006 and 2009.

The teen now lives 90 miles away at the Oconomowoc, Wis., Developmental Training Center, where he attends school, has friends and even holds a part-time job.

Last year, a residential school in Quincy in western Illinois discharged emotionally disturbed students with Individual Care Grants because the state had not paid their bills. Rather than allow Tim to suffer a similar fate, the family is prepared to leave Barrington and establish residency in Wisconsin, where the pockets are perceived as deeper.

"He has achieved stability for the first time since age 4," Hickey said. "With supports, he can be a productive member of society. Without it, he's a threat."

Patrice Evans also looked north for answers. When her son was diagnosed with autism before his 3rd birthday, her clinician delivered this sobering pronouncement: If your child isn't effectively communicating by age 5, he never will.

"I hung up that phone and a week later, our house was on the market," said the mother of three boys.

By relocating from Grayslake to Kenosha in 2006, Geoffrey, now age 7, could qualify for three years of intensive therapy. "He's made tremendous gains. … It's a once-in-a-lifetime gift."

In Grayslake, the same treatment would have cost the family at least $88,000 a year — none of it paid for by the state or health insurance. Perhaps that is why about one-third of the parents in the Kenosha-area autism support group are Illinois refugees, said Farrah Sonnenberg, Geoffrey's service provider.

Evans acknowledges she is fortunate; she could give her son a better future by moving but still keep her job as a research analyst for the Lake County Circuit Court.

"Still, I'm from Illinois … and I'm angry that we had to move," she said.